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Author Topic: He's almost on the list!  (Read 5635 times)
Sara
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« on: August 22, 2006, 06:09:03 PM »

Joe's transplant coordinator at Mayo Clinic told him today that she's just waiting for one more test to come back negative (the stool one...yuck) and then he'll be on the list.  Now what?...



EDITED: Thread moved to "Transplant" section - Epoman, Owner/Admin
« Last Edit: August 22, 2006, 07:02:04 PM by Epoman » Logged

Sara, wife to Joe (he's the one on dialysis)

Hemodialysis in-center since Jan '06
Transplant list since Sept '06
Joe died July 18, 2007
Rerun
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Going through life tied to a chair!

« Reply #1 on: August 22, 2006, 07:50:55 PM »

Then........you carry your cell phone (or pager) whereever you go and pray that some family who faces the tragic loss of their loved one has the sense to donate organs.
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MelissaJean
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it's better to find peace than understanding

« Reply #2 on: August 22, 2006, 10:29:49 PM »

Two things I recommend:

Designate someone to "pass on the news"

Pack an overnight bag for you and your husband (from my experience the call usually comes between 12am-6am, and it takes a while in between the call and the time the transplant happens)

Arrange for someone to take care of your house/animals
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~Melissa~

"just run with me through rows of speeding cars"

- Born with Cystic Fibrosis
- Received double lung transplant 11/9/2001
- Complications from transplant:  Diabetes, Kidney Failure
- Started dialysis 6/6/06
coravh
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« Reply #3 on: August 23, 2006, 02:26:17 PM »

I don't know what it's like everywhere, but be prepared to be the "backup". Sorry to be the bearer of bad tidings, but at my center here in Ottawa, they don't warn you a great deal about being the backup. Basically, that is a 2nd person they call, just in case the first person fails the cross match or has some other problem. You both wait in the hospital and wait (with a rapidly beating heart, I'm sure) to see which one gets the kidney. I had one friend called about 6 months after he started dialysis. He didn't get the kidney and that was over 3 years ago. I also had another friend who was the backup and ended up getting the kidney. The 2nd backup who had been called was not too happy to arrive at the hospital to find out that my friend was in surgery already. Bummer!

The call is a wonderful thing, but be prepared for the fact that the operation might not go ahead.

 I wish you the best of luck and hope you get a kidney very soon.

Cora
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Black
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« Reply #4 on: August 23, 2006, 06:16:03 PM »

Hope everything goes well and the wait is short.
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
Sara
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« Reply #5 on: September 06, 2006, 05:09:41 PM »

Joe was told today he is officially on the list!  Woo-hoo! 
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Sara, wife to Joe (he's the one on dialysis)

Hemodialysis in-center since Jan '06
Transplant list since Sept '06
Joe died July 18, 2007
Rerun
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Going through life tied to a chair!

« Reply #6 on: September 06, 2006, 05:12:00 PM »

Congratulations ~  Now just wait for the call.
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charee
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« Reply #7 on: September 06, 2006, 05:12:38 PM »

Well done. I am nearly there , I still need a stress test and a dental checkup Then its the real hard bit I have to drop a few Kilos.  
« Last Edit: September 06, 2006, 05:17:33 PM by charee » Logged

Home Hemo  18 months
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from my beautiful sister
Royal Prince Alfred Sydney Australia

Live donors rock
goofynina
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He is the love of my life......

« Reply #8 on: September 06, 2006, 05:15:45 PM »

Sara, i am so happy for you and Joe, hope all goes well, keep the faith girlfriend  :)

Charee, you go girl, you can do it,  afterall, you are apart of the best support group EVER... ihatedialysis.com... we are here for you every step of the way.  ;)
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vandie
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« Reply #9 on: September 06, 2006, 05:20:10 PM »

Well done. I am nearly there , I still need a stress test and a dental checkup Then its the real hard bit I have to drop a few Kilos.  


Keep your eye on the prize, charee.  you can do it!!
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Life is the journey, not the destination.
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I received a kidney transplant on August 4, 2007.
vandie
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« Reply #10 on: September 06, 2006, 05:21:03 PM »

Joe was told today he is officially on the list!  Woo-hoo! 

That's great news, sara.  I am very happy for both of you.
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Life is the journey, not the destination.
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I received a kidney transplant on August 4, 2007.
Black
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« Reply #11 on: September 06, 2006, 06:03:52 PM »

Joe was told today he is officially on the list!  Woo-hoo! 

Hope the call comes quickly!!
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
angieskidney
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« Reply #12 on: September 07, 2006, 12:16:47 AM »

In my Province the transplant Coordinator got me a pager from the local telephone company which I don't pay for and only the transplant hospital has the number! If it rings I know to call them back and prepare for going for a 2 1/2 hr trip! ;) Do they have anything like that in your area?
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
Joe Paul
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« Reply #13 on: September 07, 2006, 01:05:31 AM »

Great news Sara, I hope it isnt too long a wait for Joe.
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"The history of discovery is completed by those who don't follow rules"
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Transplant Jan. 8, 2010
allison
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« Reply #14 on: September 24, 2006, 07:14:26 PM »

I don't know what it's like everywhere, but be prepared to be the "backup". Sorry to be the bearer of bad tidings, but at my center here in Ottawa, they don't warn you a great deal about being the backup. Basically, that is a 2nd person they call, just in case the first person fails the cross match or has some other problem.

yeah, the official policy in the U.S. is that (if the UNOS computer doesn't find a "perfect" match) the top five local matches are called to be tested for the kidney. so it's possible one could be called a few different times for a kidney before actually getting it. or, one might be third in line, but end up getting the kidney, because the folks ahead of them failed their tests, or were sick, and were cancelled out.

and congrats to Joe for getting on the list; and with the Mayo clinic! that's great. i'd pick them or Shands in Gainesville as far as transplant centers.


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